Holy cow what a cool morning. Earlier today our team visited the ISF MIBG construction site at Levine Children’s. To set foot into the pediatric cancer therapy site that your dollars support is surreal!

In the pictures you will see a couple of things. The space on the right will be the patient room, the space on the left will be the parent/guardian room… in between you will notice a large steel door frame where the lead lined door will be placed. The huge structural steel beams have been set underneath the floors and on the ceiling… these are required to hold the weight of the lead bricks that are encompassing the room to protect and manage the MIBG Therapy safely for both patients, family and staff. Lead bricks have been installed partially on one wall. (Insider scoop: the construction team may or may not have broken two elevators getting them up to the 11th floor. That’s how heavy the lead bricks are.)

It was impressive to learn that the lead lined doors and windows will be thicker than any other MIBG Therapy room doors/windows in the country which will provide the best radiation protection during this cancer therapy. Looking forward to sharing these pictures.

The LCH team is getting ready prepping. Nurse Dawn, MIBG Therapy Program Director, has been super busy creating program materials, administering the core nursing education, and have learned from support staff such as radiation safety, child life specialists and bone marrow transplant coordinators. The MIBG nursing team has had a conference call with Nationwide Children’s Hospital where they were given the opportunity to ask experienced MIBG nurses what they have learned, what they would change, their fears, ect. That’s pretty cool.

We are looking for individuals who want to be part of providing comfortable care for the kids/families that go through MIBG Treatment. Our new MIBG Ambassador Program gives you the flexibility of raising $5,000 the way you want to raise it… 100% of funds raised through this program will be distributed very specifically through our LCH partnership with this very targeted MIBG purpose. {You do not have to be located in Charlotte to participate, contact Tia for details}

I remember that I hated when someone mentioned it to me. We were about a week into our initial diagnosis and I was sitting in a playroom with my 2 year old attached to an IV pole. “Have you asked for her wish yet?” a woman said to me. If I had a weapon I would of hit her with it. How dare she mention this to me one week in? I didn’t know if my daughter was going to live or die and you are trying to tell me to call Make-A-Wish. That organization is for dying kids, and she is not dying.

I could write a book on things you should not say to a parent in these situations. This woman was obnoxious and out of line, but in the end she was right. Make-A-Wish was something we should look into, when we were ready. When we were, we discovered that Make-A-Wish was not for dying children. It was for children who had life-threatening diseases but not a death wish. So we called, we asked Isabella what her wish would be, and they granted it.

For those of you who knew Isabella, you knew what this wish would be. Of course it was to go to Disney World because she was all princess. We had never been and we knew it would be hard to take her and Grant given her medical condition. We had some stipulations of course because in all things, we knew what was best. We asked to stay close to the park. We had kids who napped and driving back and forth wasn’t an option. She wanted to go Trick or Treating there so we got tickets to the Mickey’s Not So Scary Halloween. She wanted to meet princesses oh and we forgot to mention, Grandma is joining us on our trip.

Well… little did we know this Disney trip would ruin Disney forever. J Limo rides, rooms on the concierge floor at the Grand Floridian, overlooking the castle and every single thing her heart desired. Grant was not left out of the festivities either – he was just as special. Each day at the park was filled with meet and greets where she went to the front of every line with her brother. They dressed up as Minnie and Mickey for Halloween and fell asleep together in a stroller every night.

Isabella was born to give sound bites. She would hug you so tightly as we watched the fireworks each night say, “this is the best day of my life”, or “dreams really do come true Mommy!”. I mean really. It was crazy to watch because days before she could barely move in the hospital due to the toxic chemo. It was like this trip brought her back to life in a way.

Disney became the thing we knew we could dangle in front of her. I can’t tell you how many times we would unhook her IV in New York City, fly through Charlotte and pick up Grant (and eventually Sophia) and be on our way to Disney. I would get calls from her oncologist while we were watching the parade by Cinderella’s castle with instruction on how to take her to the nearest hospital to check her blood counts. We would walk through the park, occasionally finding a trashcan where she would hack up her latest side effect before getting on the next ride. The girl was an animal. She loved Disney – and it brought her back from sickness time and time again.

We even decided to take her there just a couple of weeks before she passed away. Make-A-Wish has made this place the one place in the world that brought her the most happiness. We saw the impact that a wish trip had on her mental and physical state, as well as the rest of us. It made miracles happen for us – so many times.

Make-A-Wish didn’t just give her a Disney trip. It gave her some of the BEST days of her life and some of the best memories of mine. For this reason, I can’t think of a better gift than to honor another girl’s wish on what would have been Isabella’s 13th birthday. If she were here today, I know it would be her wish to pass this experience on to another child. So that is what we will do for her.

Let’s Become a WishMaker Together in Honor of Isabella

Make-A-Wish granted Isabella her wish and gave her the best days of her life. Make-A-Wish also gave her family the best memories of theirs. The positive impact wishes give to kids and their families are invaluable.

There is a girl fighting cancer, Sydney, who is 13 years old and wishes to visit the Harry Potter museum in London. We can’t think of a better gift than to honor another girl’s wish on what would have been Isabella’s 13th birthday.

Pleasedonate to help make Sydney’s wish come true. Donations of all values will help us collectively reach the $6,000 fundraising goal by March 31.

*Donations made to this campaign are a gift to the mission of Make-A-Wish. Each contribution will be pooled with other gifts to grant the wish of the child shown above or of other eligible children. Costs shown are estimates. All wishes listed will be granted.

Back again! The ISF youth t-shirt designs we received last year were so cute… we have to do it again. Kids ages 5-12 years old are invited to submit an original logo design for the Isabella Santos Foundation 5K/10K race event. The winning logo design will be feature on t-shirts given to all YOUTH participants at the ISF 5k/10K event. Thank you Charlotte Eye Ear Nose & Throat Associates, P.A. for sponsoring the ISF Kids T-Shirt Design contest for a second year!

This year we were super excited to have our favorite art studio, Small Hands Big Art, host a T-Shirt Design Workshop last week to kick off the contest. We were also super excited that it filled up immediately. Many creative and cute designs came to life and now we are opening the contest up for emailed entries. This being our 10th Anniversary, we are looking for a design that reflects that significance! Parents- this is the perfect time to talk to your child about ISF, about kids fighting cancer and get them excited about participating in the 5K/10K/Fun Run event on September 30th!

We have a few events that are still in need of several volunteers . Please click on the respective links to signup/email. Contact Karen with questions. We appreciate your time and passion, we could not continue our fight against childhood cancer without your dedication.

We have created an “ISF Volunteer Group” on Facebook for future opportunities & information. ISF could not do the things we do with out the help of volunteers! By being a part of this group- you will be notified of ways that you can assist us throughout the year. Not only it is fun, but also rewarding to be part of our overall fight. We are ALL making a difference together and we would love to have you be a part of our ISF family. We hope that this group will be a fast and easy way to let you know what we have going on and where you can plug in to help. Please feel free to SHARE this page with anyone and ask as many members to join us too.

Yesterday, current cancer fighting patient Sofia had a fun reason to visit Levine Children’s Hospital. As Sophia’s mom put it… “Today, we were able to celebrate with our own personal super hero, Dr. Joel Kaplan (Sofia’s head oncologist), as he received a grant from Hyundai Hope on Wheels. Bonus: the kids got to put their handprints on his white lab coat and on a brand new car!”

Dr. Kaplan and Levine Children’s Hospital was awarded a $50,000 Impact Grant from Hyundai Hope on Wheels. This award was presented for his proven track record in providing excellent patient care to families affected by pediatric cancer and to support his continued efforts. We couldn’t be more thrilled with this news, Dr. Kaplan not only is Sofia’s personal super hero… he was Isabella’s as well.

Sofia was diagnosed with Acute Lymphoblastic Leukemia in January of 2016 at the age of 7. Before cancer, she was a happy, carefree 2nd grader who played soccer, took all kinds of dance classes, loved arts, crafts, hula-hooping, American Girl dolls and playing with friends and her big brother, Sam. She was blessed with such a sweet and normal childhood. In the last 1.5 years since our lives were turned upside down, Sofia has continually amazed us with her courage and resilience. Every day we look at her and wonder how such a small girl can possibly withstand all the endless appointments, needles, pokes, tests, chemos, medications and hospital stays without even complaining or feeling sorry for herself. Our favorite quote that seems to sum Sofia up perfectly is “Though she be but little, she is fierce.”

Sofia is still in treatment and will continue on her chemo regimen until May 2018 for a total of nearly 2.5 years. We are extremely grateful that she is currently doing well and we are all trying to live as normally as possible between her rounds of chemo at Levine Children’s Hospital. Sofia has even enjoyed being back in school with her friends after being homebound for one full year. She still loves all things artsy and creative, especially designing new outfits and accessories for her dolls. She is learning to sew and hopes to be a fashion designer when she grows up. Sofia is excited that she was recently asked to be the Leukemia & Lymphoma Society’s 2018 Charlotte Girl of the Year because she hopes to inspire people to take action in the fight against pediatric cancer. Behind her shy exterior lies the heart of a budding activist!

We LOVE Tory Burch here at ISF and excited that Tory Burch, SouthPark Mall is holding a shopping event benefiting ISF next Wednesday, July 12th from 6-8pm. This store has supported the foundation for several years, we appreciate our community friends who give back. 20% of the evening’s proceeds will benefit ISF and supporting the fight against childhood cancer